Think back to 1990 for a moment if you can; the world felt a very different place, especially if you were living with a learning disability. The law at the time focused on ‘fixing’ people or keeping them safe by tucking them away in large hospitals. It was about what the person wanted but what the system thought was best for them.
Fast forward 35 years and we’ve been on a massive journey, moving away from cold institutional days towards a world that (mostly) tries to centre the person as the decision-maker. There have been huge wins, such as the birth of ‘advocates’ - impartial individuals who stand shoulder to shoulder with people to make sure their voice is heard, and new laws that lay out just because you have a learning disability, it doesn’t mean you belong in some hospital away from society.
In this series, we will walk you through that history. It’s a story of scandals that broke our hearts, campaigners refusing to give up, and how we’re finally learning that mental health is about human rights, not just a diagnosis. To begin, we’d like to share the story of Bournewood Gap and a man we’ll call HL. HL’s story highlights the massive ‘hole’ left in the law during that time, which left thousands of vulnerable people without a voice for decades.
HL was born in 1949 and at 7 years old, he was diagnosed as autistic and with psychosis. As a result, he struggled to communicate with others around him, and this led to him exhibiting challenging behaviours as well as self-harming. In 1962, at the age of 13, HL was admitted to Bournewood Hospital as HL had become too big and strong for his mother, and at the time, it was reported ‘he needs training and discipline’.
Sadly, whilst he was in Bournewood, HL’s parents both passed away.
After 32 years of living in Bournewood Hospital, HL was moved into the home of Mr and Mrs E, who went on to care for him as part of a resettlement scheme. He lived with the couple for three years, until one day when HL was at a day centre, his behaviour deteriorated and he was subsequently admitted to Bournewood Hospital.
While he was at Bournewood, HL didn’t struggle, lash out or try to run away; the doctors described him as compliant even. The hospital didn’t section him under the Mental Health Act (1983); they just kept him as an informal patient. As HL lacked the ‘capacity’ to say “I want to go home,” he technically wasn’t being detained. He wasn’t allowed visits from his foster carers, Mr and Mrs E, who were very concerned for him, or allowed to be taken home.
He was left in a legal limbo. HL wasn’t ‘sectioned’ so had no legal right to an appeal or even a solicitor. He wasn’t free because he was not allowed to leave. This effectively made him a prisoner, but without any legal rights a prisoner has.
Mr and Mrs E didn’t give up; they took HL’s case all the way to the European Court of Human Rights. In 2024, the court ruled that the UK had violated HL’s rights, stating ‘You can’t just keep someone in a hospital indefinitely just because they aren’t fighting to leave.’ This ruling forced the UK Government to create the Deprivation of Liberty Safeguards (DoLS) in 2008. Because of HL, the law admitted that silence is not the same as consent, leading to a massive shift in advocacy.
Today, if someone was in HL’s position, they would have the legal right to an Independent Mental Capacity Advocate (IMCA). Their role is to stand alongside the person and say ‘wait a minute, what does this person actually want?’ And ‘is this truly the best place for them?’
HL eventually got to go home to his foster carers, but his legacy is that ‘gap’ in the law is now closed. No one should ever be ‘quietly’ kept away from their lives again without a way to shout for help.
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